Experience and management of cancer-related fatigue in teenagers and young adults. Dr Anna Spathis Consultant in Palliative Medicine

Transcription

1 Experience and management of cancer-related fatigue in teenagers and young adults f Dr Anna Spathis Consultant in Palliative Medicine

2 Cancer-related fatigue in teenagers and young adults 1. Why? Context and importance 2. What? Overview and key findings 3. So what? Outputs and next steps

3 Cancer-related fatigue (CRF) Fatigue is a distressing, persistent, subjective sense of physical, emotional and/or cognitive tiredness... that is not proportional to recent activity and interferes with usual functioning (NCCN 2013) It s a horrible feeling you don t belong anymore... Life goes on without me. I feel like someone let the plug out...just getting through each day... I did not have the physical or emotional energy to give to anyone else... a very humbling and isolating experience

4 Teenage and young adult (TYA) cancer

5 1. Why? CRF in TYAs particularly problematic More severe for developmental and behavioural reasons Worse impact as hinders developmental needs and life course Cannot extrapolate evidence from adults to TYAs Global drive for evidence-based age-appropriate healthcare Patients want this research National and regional research priority Extensive PPI including e-focus group

6 2. What? Study 1 Systematic review of TYA CRF (2014, updated 2018) Comprehensive evaluation of any aspect of TYA CRF Study 2 Fatigue in Focus survey [FinF] (2015) Electronic, multicentre survey evaluating prevalence, impact and current management Study 3 Fatigue Intervention Co-design Study [FICS] ( ) Multiphase, qualitative study, including delivery and amendment of prototype intervention

7 Study 1: Systematic literature review Most prevalent Most distressing Neglected...

8 Study 2: Fatigue in Focus Survey Objectives Prevalence, severity, impact, current management Feasibility of electronic survey methodology Methods Age of 13 UK Treatment Centres Prior priming Process data 80/197 responded (41%) 86/4892 missing data (1.8%)

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10 Key outcomes Persistence Fatigue prevalence 85%. Severity worse >1 year after end of cancer treatment (p=0.007). Impact Symptom with most negative impact on daily life; main impact was on ability to exercise. Negative impact on carer in 87%. Management 41% did not receive fatigue management. Commonest approach was advice to exercise, and most participants would recommend exercise as the best treatment. However, participants did not find exercise advice helpful personally.

11 Study 3: Fatigue Intervention Co-design Study Objectives Elicit views on factors impacting on fatigue and self-efficacy Explore the experiences of parents Co-design intervention and evaluate experience of prototype Theory Self-Efficacy Theory (Bandura) Methods Phase A: Interviews and focus groups, patient-parent dyads Phase B: Prototype intervention development and delivery Phase C: Second interviews with patients and parents

12 Conceptual summary Management of TYA cancer-related fatigue Less about cancer more about young age Less about fatigue itself more about responses to fatigue Less about behaviour change......more about cognitive change to increase self-efficacy

13 Next steps

14 Acknowledgements Stephen Barclay University Supervisor Collaborators Laura Abbas Sara Booth Julie Burkin Amy Chapman Faith Gibson Helen Hatcher Paddy Stone Ben Uttenthal Research support Matt Barclay Isla Kuhn Sam Barclay Andre Jansen James Brimicombe Maria Loades Rachel Campsey Martin McCabe Gemma Clarke Wendy Moss Sarah Grove Jane Robson Sarah Hoare Pia Thiemann Louise Hooker